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using C 11's Acetate and Choline BEFORE initiating any primary treatment ?

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Posted 9/14/2016 5:03 PM (GMT 0)
i may just be missing this point in the literature but :

is it possible to use C11 Choline and/or C11Acetate BEFORE
you initiate any treatment to better identify your course of
treatment. My last 4 F18 results have resulted in "clean"
scans, which hardly seems possible as my PSA's have risen
from 9 to 97 in 18 months. All my oncologist says is..."well, the technology
just isn't there, but you probably have metastatic bone cancer from
your prostate cancer"

it seems like many on the blog are reporting the use of the
2 different c11"s Acetate and Choline Scans as only being used after
the recurrence of PSA after radical treatments. Can either one or both
be more effective to create a plan of treatment ?
Posted 9/14/2016 6:52 PM (GMT 0)
Do I understand that your PSA is up ten-fold in 18 months, you are under the care of an oncologist and you haven't started any primary treatment? What are you waiting for? What are the facts of your dx such as Gleason scores and amount of involvement from the biopsy?

I hope I haven't misunderstood your post. Tall Allen is well versed on the use of bariois scans and I am sure he will address your questions.
Posted 9/14/2016 7:09 PM (GMT 0)
Dr Kwon at Mayo uses C11-Choline Pet scans to find small PCa mets.
Posted 9/14/2016 8:17 PM (GMT 0)
If I had it to do over again I wish we had taken our MO's advice to do a PET scan beforehand. It would have been an out of pocket cost for us though. While it probably would not have changed our course of treatment it would have given us a better idea of what we might be dealing with.
Posted 9/14/2016 8:45 PM (GMT 0)
sjn-

If your PSA is at 97 and has risen that quickly, you almost certainly have metastases somewhere. NaF18 only detects bone mets. If your mets are in soft tissue, it will not see them. Neither will a bone scan. To detect mets in soft tissue (lymph nodes, organs), you need one of the other kinds of scans to detect it.

The fluciclovine PET scan was recently FDA-approved and is in expanded clinical trials right now, so you can probably get that. I don't know the cost. NIH has one, called DCFBC PET/CT, that is free. If you are on Medicare, they may approve the C-11 Choline PET/CT at Mayo. Where are you located?

You'll want to do this before starting on hormone therapy or docetaxel, as they will shrink the metastases and may make them undetectable.

- Allen
Posted 9/14/2016 11:43 PM (GMT 0)
Hello SJN ---

I see you are a new "Member Of The Club" --- posting here for the first time --- we're a collective "Band Of Brothers" here --- willing to support you --- encourage you --- and to share our treatment experiences with you.

We've got members here from every corner of the country, as well as loyal members from across the globe --- with members willing to share their treatment stories and first-hand expertise with you.

With that being said, you are asking specifically about the PET-CHOLINE scan. Several of us here have had the choline scan. I've had the choline scan three different times at Mayo Clinic in Rochester, Minnesota.

Mayo Clinic has "branches" in Arizona and Florida, as well. I was told that they are going to begin offering the choline scan at the Mayo Clinic branch located in Flagstaff, Arizona, in the near future. I just had my latest choline scan at Mayo Clinic this past summer in Rochester, Minnesota --- and plan to return there again after Christmas.

With the rising P.S.A. that you are describing, you'll want to take a proactive approach to your treatment plan. Sometimes you have to become your own advocate --- seek out an expert in prostate cancer and examine all your treatment possibilities.

Let us know how you are faring --- let us know what course of treatments you decide to pursue. We're here to support you, every step of the way!

Sent with my best,
"Cyclone Team Fan" ~ Iowa State University
Posted 9/15/2016 4:19 PM (GMT 0)
I had the F18 Sodium bone scan and the C-11 Acetate at AZ Molecular Imaging in Phoenix by Dr. Fabio Almeida.

This was not for recurrence but rather initial onset. In fact it changed my diagnosis from stage IV bone mets by a rural FL imaging center to no bone mets but 3 micro lymph nodes all contained in pelvic region, i.e., locally advanced and treatable with SBRT and Provenge.

I am G9 (4+5) and my PSA never got beyond 3.68, so way different from your PSA @ 97.

One of the benefits of advanced scans is to detect the mets and make you eligible for Provenge in conjunction with whatever other treatment you choose.
Posted 9/15/2016 5:14 PM (GMT 0)
thank you all for your quick responses and educated points of view. to be honest, I'm reeling with disappointment about what other possibilities were never addressed as to the reasonable causes of such a steep PSA climb in such short period of time. My treatment seems to rest on the adage...."if every problem is a nail,every solution must be a hammer." ......just hit that nail a little harder....it could only be metastasized bone cancer.....it will show up one of these days.......when I asked my oncologist how much time I had left, his
response was ...."I wouldn't be buying any 2017 calendars.".......what could I say to that but....."Oh, ok"
I'll put up some of my history over the weekend.
Posted 9/15/2016 6:04 PM (GMT 0)
With an answer like that the first thing I would do is to get a new oncologist. Back to my original question. Why haven't you started some of the reliable well proven treatment methods?
Posted 9/16/2016 2:38 PM (GMT 0)
Hi SJN:

Like Nomar, I have used Dr. Almeida's C11 PET/CT scan with Acetate in Phoenix 3 times now, successfully to point out soft tissue and bone mets undetected by normal CT scans. My Canadian oncs use these scans to determine treatment.

The cost is $3000, versus what I understand to be some $7000 for the C-11 Choline scan at Mayo, yet I have not seen any direct comparison between the two. My general understanding is that they are equal.

Houseboy
Posted 9/16/2016 8:30 PM (GMT 0)
SJN, have you been formally diagnosed with a biopsy? What were the results of that biopsy, Gleason score, number of positive cores, that kind of stuff..

If you live in or can travel to the United States you can get any kind of medical treatment you want if you have the money....
Posted 9/27/2016 7:57 PM (GMT 0)
hi folks,

I've scheduled a C11 Acetate scan for 10/16 in Phoenix. great sense of care in setting things up with the office staff there. while the cost seems steep, the 2 years of rising PSA scores with bone scans eliciting nothing make this trip worthwhile in itself.

I had a biopsy at UCLA a couple of years ago. Gleason scores were G9 4+5 in 2 areas and G7 4+3 in 4 areas. I think I have given AS new meaning with a PSA score of 97. after reading the messages off this board on C11, you've given me the strength to fight my oncologist on this front and to take my life back into my own hands.
Posted 9/27/2016 8:59 PM (GMT 0)
Are you in LA? If so, you can get the C11 Acetate PET at UCLA and save money on it. I think someone recently posted that they now offer the Ga-68-PSMA PET/CT at UCLA - the price is around $2,500 and it is better than the C-11 PET. You can also get the fluciclovine PET at Cedars/Tower Urology, which is also better than the C-11 PET.
Posted 9/27/2016 10:44 PM (GMT 0)
Sjn
For your Doctor to make unwarranted comments like you have related, was in my opinion was both unprofessional and unwarranted. hopefully you dismissed him(or her) and moved on to a more Professional expert. No one should limit the timeline of your life ,because even the experts do not know for sure.
Keep the faith that you will stabilize and get that PSA down again.
Wings aka Dan in So cal
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